Hey guys (and gals), I am a wife posting for my husband. In case you remember me from previous posts, in January my 45 year old husband was diagnosed with very low risk Pca, PSA 1.9 and 1 core out of 13 cores 15% 3+3 in the transition zone at MRI targeted biopsy, super low Oncotype GPS score of 12 . AS was an option that was discussed, but my husband really wanted to do the right thing and be proactive so he decided to go under the knife and get a RALP. The final pathology came back and the doctor called to inform us the good news was he remained a G6 after surgery, the bad news was there was a positive margin at the bladder neck. So although the positive margin was not good... the G6 meant to us that even if he does have a BCR , SRT should take care of it. Because G6 does not metastasize, right?

After surgery, He had a great recovery... NO ED whatsoever (no ED meds needed) and very minimal stress incontinence. We were loving life, traveling to Italy 6 weeks post op and he was feeling great!

Well this week was the first post-op appointment with the surgeon. I came prepared with a list of questions... I learned that the tumor had invaded the ENTIRE anterior portion of the prostate. Something like 3.8 cm in diameter. There was extensive infiltration of the bladder neck... It was one of those " we have never seen this before" situations. He mentioned the tumor had actually invaded the muscle at the bladder neck, which is something gleason 6 is not supposed to do.

Not very comforting.... I am going to have the specimen sent to Epstein for a second opinion. I feel like they are missing something... This was all done at a center of excellence , UCLA... but considering the odd case I want another opinion.

Has anyone else had a high volume gleason 6? Positive margins with G6?

You are doing the best action that you can take right now by sending the specimen slides to Dr. Epstein.

He has probably seen more PCa specimens than anyone alive, and has stated that he had never seen a true G6 metastasize. I am almost willing to bet that he will add some new findings to the existing assessment.DOB: May 1944In Active Surveillance program at Johns HopkinsStrict protocol of tests, including PHI, DRE, MRI, and biopsy.Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.PSA 4.4, fPSA 24, PHI 32Hopefully, I can remain untreated. So far, so good.

My prostate was (4.5cm length) x (3.6cm width) x (3.5cm thick), so total (56.7 cubic cm). I had 30% involvement, mostly in right side, focally in left. So I very likely had a big chunk of cancer just like your husband did. Mine was (3 + 4 = 7) but the gleason 4 part was very small. So probably very similar to your husband's prostate.

I went 5 years totally undetectable on uPSA. Then it showed as mid .020s in Feb 2017. Have been tracking my uPSA about monthly, and recently it's been about mid .030s, at about 2.5 years later. So something to watch, but not sure where mine will go in future. My theory is my gleason 6 margin bit of tissue is just sitting there, doing not much, and I hope I can just outlive it without further bother.

Your husband may have a similar outcome. You definitely need to get Epstein to score the positive margin. If that margin is all that remains of the bladder neck invasion, and it (the margin) is truly gleason 6, you may not need to do anything for a while, maybe forever. Even if it does grow and produce uPSA, that does not mean it will metastasize outside the (former) prostate area. It could (very likely) stay local. But you won't know for some time. You would be well advised to watch uPSA about quarterly for the long haul, and be prepared to hit it with SRT if it does start getting out of control and uPSA really does spike up and up. If it does spike, or if at age 45 he just feels adjuvant SRT now is the way to go, your docs will likely agree on it.

Not sure about your comment about gleason 6 not supposed to invade outside prostate. Locally advanced and metastatic are not the same. Your husband may have had locally advanced PCa, but not metastatic. See this from the cited paper:

"Locally advanced prostate cancer has extended clinically beyond the prostatic capsule, with invasion of the pericapsular tissue, bladder neck, or seminal vesicles, but without lymph node involvement or distant metastases. It is referred to as T3–T4 N0 M0 prostatic cancer."

Yes, get the Epstein ruling. Make sure Epstein provides the gleason at the one margin. And, of course, make sure this is the standard PCa cancer, and not the rare type that puts out low PSA even when growing wildly. It does seem odd about his 1.9 PSA and minimal biopsy cores, then having such a large amount of PCa on path. But maybe just because he is young, and biopsies can miss a lot. So that's probably not an issue.

I think the first uPSA at <.01 is really, really good news, and hope the best for you both.

Thanks for the responses! I’m hoping all that Epstein finds is a true Gleason 6 that will never kill him! But we really should know if there is anything that warrants SRT now instead of waiting for BCR . The UCLA pathologist does have excellent credentials including a residency at John Hopkins... but until Epstein looks at it, I don’t trust it 100% .Bobbiesan- glad you are doing so well. Sounds like a very slow doubling time! Did you do SRT or just RALP?

I understand that locally advanced is completely different than distant mets. What had us concerned was the invasive behavior of this Gleason 6 cancer which is supposed to be indolent. The rare type of Pca that puts out very little psa is either small cell carcinoma or very poorly differentiated pca (G9/10) neither which is the case for him, thank god for that! Low psa- high volume , the doc just shrugged when I asked him about this. He said, “ just when you think you had it all figured out, something new comes up”... Just like everyone else in my life, my hubby is an odd duck!

Yes, G6 is indolent as it doesn’t progress to more aggressive strains that become metastatic. However it can grow in the prostate area and cause problems. One of our members several years ago had G6 that was growing and bulging in a way that caused bowel problems. G6 can not live outside the prostate area, but it can develop enough tumor mass that it causes problems. Thankfully most G6 men never experience these issues.

Leah, you are prudent getting further investigation of the tissue. You are in a situation, as Bobiesan says, that you have to monitor the disease and be prepared to treat as necessary. Most likely you are in a management situation and will never have PCa advancement that is threatening.PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta

Local pathologist had mine a 5 mm margin (he did’t grade it). Sent it to Epstein.

Epstein measured 3 mm, G6, right lateral.

When psa bounced to .05, I consulted with JH radiology. (They said, “Treat now. We’ll set it up”.)

Couldn’t quite “get there”. Came home and got new PSA reading. Went down. Consulted with local RO. He said, “You’ll probably need it at some point. But, with it lower, you don’t need it “today”’. “We’ll keep an eye on it”.

“Sounds good to me” I said.

Mine a “bouncy ball”. (I like to think of it as that little ball that bounced on top of lyrics to music at the bottom of the tv screen). . (You all May be too young to remember...). ;-)

I have 2 positive margins and am G6 according to pathology following surgery.My personal opinion is it can be invasive. My father died of PC which makes me suspicious of how safe a G6 is. The rating of G6 or whatever also is somewhat subjective to whoever is looking at it - my own urologist mentioned this. On biopsy I was told 3+4, yet surgery pathology said 3+3. I wonder if one may be a 'high' G6 or a 'low G6.

Island time, when you sent your slides to Epstein, what was the turnaround time? Were you able to consult with him by phone? Or do you just get a report?Jasper, I’m so sorry about your dad. Yes, I’ve also read that pathology is highly subjective, which is why I’m getting a second expert opinion. Also, something to mention; The guidelines for determining Gleason scores have changed several times over the years. A lot of cases that were called a G6 would be labeled as G7 today. The most recent changes were in 2014. Perhaps your dad would today have been considered a G7.

The one time I’ve asked if I could speak with him the lady told me, “Sure. He’s standing right here.”

There was one other time I called for a special request. (Something about my wondering if he’d check for certain genes or something. It had to do with something JH was working on at the time). When I asked the lady if they could, or would, test my samples, she said she didn’t know. She said she’d ask. I could hear them discussing my request in the background. When she came back on, she told me, “He said, ‘That’s not what this test was ever meant for, but if you want him to, he will.”

I got both Leah. After a week or two (can’t remember) ...I got impatient. So I called to see what the deal was. They then told me the results over the telephone. Shortly after, I got a written report in the mail.

I have sent emails to him and always got a response the next day. Just recognize that he is very busy, so be to the point with him. He is very professional and gracious and provides great clarity in his communications.PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta

Leah - My JH slides got hung up at Christmas time so did not get results until January after 3 weeks. Since the results were sent by hospital pathology at my request through urologist, they got the results and urologist called me shortly thereafter with them. A call to them will always help if it seems you have been waiting too long.

I called Dr. Epstein but he was out of town as you might expect with someone at his level. However, I did talk with the pathologist who actually did the analysis and he was quite helpful. I then sent a followup email to Dr. Epstein and he responded very quickly which reassured me that ART was the correct decision for my specific post-op pathology.

Hopefully I will remember this correctly, I asked the pathologist I talked with why there would be such a difference between the hospital pathology (4+3+5) and their pathology results (4+5). He was very protective of the other pathologists and said that there are different ways of evaluating cancers (ie: breast vs prostate) and pathologists generally work on all cancers thus a diagnosis may be reasonably correct in a general sense. In their case, Dr. Epstein specializes in prostate cancer and sees things a little differently based on his experience so he calls it the way he sees the cancer and its classification for treatment requirements (ie; Gleason at margin). So in my case, I should be looking at it as a G9 and not a G7 even though the differences may only be in the percentages estimated of a predominately grade 4 cancer.

The little I have studied the cancer grades just looks like an ink blot test to me and people will see almost anything in the images. I think this has always been the complaint given the subjective nature of visual cell classification which depends on the experience and judgement of the pathologist. The yes and no is easy, the grade differentiation is much harder.

Mumbo said...I asked the pathologist I talked with why there would be such a difference between the hospital pathology (4+3+5) and their pathology results (4+5)... So in my case, I should be looking at it as a G9 and not a G7 even though the differences may only be in the percentages estimated of a predominately grade 4 cancer.

I think it was Tall Allen that explained to me that Gleason grading is 1) the first number is the most predominant cell type by volume, as most of us know, and 2) the second number is the highest grade of the cell type that are lower in volume than the primary score.

So in your case of 4+3+5, your percentages of volume may have had a larger volume of grade 3 and a very small percentage of grade 5. A "regular" pathologist would place the grade 3 second, though the smaller volume of grade 5 cells qualifies to take the second position, being higher grade than the more voluminous grade 3 cells.

The first G grade listed is the grade that exceeds 50% of the sample. The next grade is that which makes up most of the rest of the sample, but is less than 50%. If there is a tertiary grade it is usually at least 5% of the sample and should be a higher grade than the others.

So 4+3+5 is G4 is greater than 50%, G3 is the second most grade in the sample and G5 is present and is a higher grade than the others listed. This would be a G score of 7 with a tertiary 5. Conversely one could actually read a 4+5+3=9. However, since the tertiary grade 3 is lower than the other grades it would not be listed. The actual G score would simply be 4+5=9.

Some scores can determine risk factors like the difference between 3+4=7 and 4+3=7. The latter is much higher risk as the volume of the G4 is more than 50% of the sample. However when you get to scores 8 and 9 such a distinction is not made. 4+4, 3+5 and 5+3 all are G8 and high risk. Same with 4+5 and 5+4. There would be no treatment distinctions to make.

My urologist and MO both said they treat to the highest G grade, not the overall score. This can be particularly important when you have something like 3+4+5=G7 with a tertiary 5. But the presence of the tertiary 5 would most often dictate treating as high risk where as G7 is normally intermediate risk.PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta

Update: We got the second opinion pathology report back from Dr. Epstein and also spoke to him on the phone.He agreed 100% with the UCLA pathologist findings (whom he spoke very highly of, she was a resident in his lab and they have done research papers together, etc) . My husband is a pure gleason 6 (yay!) but his tumor is locally invasive. He was leaning towards recommending ART due to the extent of the positive margins (6mm total) and because of the location at the bladder neck. He felt confident the RT will "clean up the rest" and that we should do it before the cancer invades the bladder. Also, due to the fact that his cancer doesn't put out a lot of PSA, post RP psa is not the best indicator for recurrence. His tumor volume was extensive with a normal/elevated PSA (1.9). I did question the low psa/tumor volume and he just said " it happens and is not all that unusual" . No, he does not have small cell or anything like that. Just a big G6 tumor. Unusual, yes... unheard of , no. We are going to consult with a few RO's and take it from there. We already know and like Dr. Chris King with UCLA. Since this is the last shot we have at this, we want to go with the best. My husband might consider consulting with Dr. Zelefsky at MSK as well. We are willing to travel for the best! This is a great example that supports Dr. Epstein's stance on gleason 6... yes it is cancer! I'm glad we followed our gut and pursued treatment instead of AS.Wife posting for husband. Diagnosed 1/19 @ 44 years old . LUTS for several years. PSA 07/18 2.3 , 12/18 1.9 . 1/19 MRI , PIRADS 4 .MRI fusion Biopsy 1 out of 13 cores <15% Gleason 6. GPS score 12. RALP 04/19 with DR. Reiter UCLA. Final pathology Huge 3+3 transition zone tumor. T3a + margin at bladder neck. Docs are all shocked! No ED & 99% dry immediately post op! 7/19

The analogy I like for how Gleason 6 disease is different in kind from higher-grade cancers is that, while both can spread, Gleason 6 disease spreads like crabgrass while Gleason 9 spreads like dandelions. Crabgrass can grow under your azaleas where it is hard to pull up but it won't pop up in your back yard because the wind has spread the seeds all over the place. When surgery misses a bit of Gleason 6 cancer it's fairly easy to go after it in a follow-up procedure because you know more-or-less where it is.65 Slow PSA rise 2007-2012: 1.4=>84 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 negDaVinci 6/14/12. "some" nerve sparing on leftPath: pT3a pN0 R1 GS9(4+5) Pos margins on rt24 mo ADT3 7/12 - 7/14Adj IMRT 66.6 Gy 10/17/12-12/13/128/2012-3/2015: Incont., Trimix, VED, PSA<0.015.AUS & IPP installed 3/5/2015Forum Moderator - Not a medical professional